Former Vice President Joe Biden, who lost his son, Beau, to cancer, headed the project. Biden put focus on data sharing, and looked to informaticists and technologists to help break down data silos that exist between organizations across the industry, academia and government. This is one of the most important steps in the advancement of cancer research.
According to the National Cancer Institute (NCI), Biden’s priorities included the combination of large data sets containing cancer information, along with creating policies and standards that make patient-level cancer data accessible. Health informatics will be crucial to creating simple, reproducible and scalable machines for widespread data access, and also for coming up with the infrastructure and tools needed for this data to be analyzed and turned into useful information. Health informaticists also have the expertise needed to ensure the safety and security of patient data.
If a strong partnership does not exist between the health informatics community and the scientists conducting cancer research, the full potential of cancer research data will remain unreachable, preventing the Cancer Moonshot initiative from furthering scientists’ knowledge of cancer and transforming patient care.
According to the NCI, Biden used this initiative to “break down silos and bring all the cancer fighters together — to work together, share information, and end cancer as we know it.”
Genomic Data Commons
An important part of the cancer moonshot initiative is the Genomic Data Commons (GDC), a “unified data system that promotes sharing of genomic and clinical data between researchers,” according to the National Institutes of Health (NIH).
The GDC was launched in June 2016 and not only will be an essential part of the National Cancer Moonshot, but part of the President’s Precision Medicine initiative as well. The main purpose of the GDC is to centralize, standardize and make data from the NCI’s Cancer Genome Atlas and TARGET (Therapeutically Applicable Research to Generate Effective Treatments) divisions more accessible. When combined, these two programs make up some of the largest and most comprehensive cancer genomics data sets in the world, according to NIH.
Researchers around the world will be able to submit their cancer genomic and clinical data to be housed in the GDC, making it possible to compare findings using analytical methods. To ensure the data in the GDC is accessible and widely useful to all cancer researchers, it will be integrated using standardized software algorithms.
“The GDC represents a major step forward, putting a wealth of information at researchers’ fingertips,” said Dr. Robert Deschenes, Associate Dean of USF Health’s College of Medicine Molecular Medicine. “The work of health informaticists has created the potential for real gains in personalized cancer treatment.”
Data security remains a top priority for the facilitators of the GDC. The necessary safeguards have been put into place to ensure secure data storage and downloading.
“With the GDC, NCI has made a major commitment to maintaining long-term storage of cancer genomic data and providing researchers with free access,” said NCI Acting Director Douglas Lowy, M.D., according to NIH. “Importantly, the explanatory power of data in the GDC will grow over time as data from more patients are included, and ultimately the GDC will accelerate our efforts in precision medicine.”
The University of Chicago Center for Data Intensive Science is where the GDC was built. It’s now being managed in collaboration with the Ontario Institute for Cancer Research. Overall, the hope is that the GDC will be the foundation for a comprehensive knowledge system for cancer. With the GDC, researchers can integrate genetic and clinical data with information regarding molecular profiles of tumors along with treatment response.
The work of health informaticists has created the potential for real gains in personalized cancer treatment.” – Dr. Robert J. Deschenes, Ph.D.
That makes the GDC an important resource for gathering potentially actionable and life-changing information, which could ultimately be used by doctors and their patients.
How the GDC Supports the Precision Medicine Initiative
Up until the launch of the Precision Medicine Initiative in 2015, most medical treatments were tailored to what is referred to as the “average patient.” Because of this general approach, many patients weren’t able to find success with a particular treatment. Precision Medicine takes into account differences in people’s genes, environments and lifestyles when devising a treatment plan. This innovative approach gives medical professionals access to the resources they need to focus on the specific treatments of illnesses encountered daily, and helps further develop scientific and medical research.
According to Huffington Post, Biden expects the GDC to play a huge role in the advancement of Precision Medicine, which is an important working part of the Cancer Moonshot Initiative. With the creation of the GDC, high quality data sharing is now being encouraged within the healthcare industry, which will help move both the Precision Medicine and the Cancer Moonshot initiatives forward.
Researchers already have made new discoveries and developed several new treatments thanks to advances in Precision Medicine. Being able to tailor treatment to a patient’s specific characteristics such as their genetics or the genetic profile of their tumor is transforming the way doctors treat diseases, especially cancer.